I usually do a post at the end or beginning of the year, looking back at the high points, and mulling over the low ones to release them. My blog has been so neglected the whole of last year, as my art has been too, and it’s taken me up till now to find the time and energy and mental ability to put this post together.
2017 was just a bad year ME-wise. At the start of the year, I honestly felt like I was slowly dying (and not just in the sense that we all are). Thankfully, last August, I began seeing a naturopath who gives me IV vitamin and mineral infusions and I’ve seen a big difference in how I feel getting them regularly. I’m still crawling out of the ME-hole and have even less energy than any year before, but I feel like it’s getting slowly better instead of always worse, now that I’m getting these treatments.
Speaking of, an enormous THANK YOU to every single one of you who has contributed so generously to my GoFundMe campaign to help me continue the quite expensive IV treatments. Thank you, thank you, thank you! I am incredibly grateful and humbled and every gift has been so deeply appreciated.
Last November my neurologist put me on a new medication to try and help ease my migraines. He warned me that it would make me feel “extremely nauseated” for the first week, but I’d just have to push through that, and then he thought it would help me. I finally screwed up my courage and swallowed one of the dubious pills and did, indeed, have a terrible night full of nausea, hot and cold sweats, extreme temperature swings and a strange, but not unwelcomed, detachment. I continued on like a good patient and after three weeks I finally stopped needing to take a sublingual Zofran the second I opened my eyes in the morning (morning nausea was always the worst, maybe because I take it at night?) and it began to settle into my body. The good thing is that it did indeed help decrease the number of migraines I’m getting per month. The bad thing is that ever since taking it, I’ve needed to sleep for a good 2-4 hours EVERY SINGLE AFTERNOON. This is on top on the 10-12 hours I spend sleeping every night. Do you realize how few hours are left in the day to do ANYTHING of value after all that damn sleeping, winding down and waking up is over with? It’s really insane. I will be bringing this up to my neurologist and seeing what can be done because I’m not sure this is a realistic way for me to live the rest of my life. On the other hand, some months prior to this I was getting up to 19 migraines a month, which destroys your ability to do anything meaningful as well.
And, for some completely unknown reason, the medication also seems to be helping (in conjuncture with the IV infusions) with my temperature regulation issues, ie, my “hot flashes.” I believe I’ve mentioned them here before, but in case I haven’t, these have been slowly increasing for the last three or four years. Essentially, what seems to be happening, from my vantage point stuck inside this body, is that in the mornings, wild rabbits have run through my brain overnight, nibbling on wires, pulling things apart, gathering bits of gray matter together to make little warrens, disconnecting neurons and causing a bit of havoc. My brain is wildly trying to repair itself, ideally quickly, and makes a lot of very broad guesses about what temperature my body should be at for the first several hours of the day. What this translates to practically is that I can be sitting miserably directly in front of the heater, covered in layers of blankets, bathrobes and cats, sweating profusely, simultaneously far too hot, but getting many more signals that I’m far too cold and must stay PERFECTLY STILL for several hours until it passes on its own. This is also very not conducive to getting anything done at all.
And yes, I did see numerous doctors about this. The first three shrugged at me and told me it sounded hormonal and that wasn’t their field, which is fair enough. I finally saw an endocrinologist for this problem and he ran a bunch of blood but didn’t bother to look at a single hormone. Apparently you have to request that an endocrinologist, a doctor who specializes in hormones, test your hormones when you’re seeing him for something which sounds, to laymen and other doctors, like a hormone problem. I did not punch him, but probably only because I was too tired. (I also asked my gynecologist about it since they deal with female hormone issues too, to a degree, and she had a “Oh, let’s not go looking for trouble,” attitude about it. I AM ALREADY IN TROUBLE.) So the underlying issue there is still unknown but hell, if the infusions and the weird pill help with it, I’m happy about that at least.
Basically I feel like 2017 was mostly spent crawling on my stomach through a disgusting swamp while people shot at me from hidden locations, periodically shouting that I wasn’t trying hard enough or that I was just over-reacting, while also making sure I brushed and flossed my teeth and fed my animals twice a day. I’ll freely admit it was a pretty shitty year.
Here is the upside to all that time spent in deep solitude, my mind active as ever but my body unable to do much: I had a lot of time to meditate and connect with my spirit guides. I think I met my first guide near the end of 2016, so I was primed for more contact when 2017 came around. And boy did they. I acquired five new main guides and spoke to numerous others. I talked with and made friends with various interdimensional beings. I am learning to channel, astral project and remote view, be medium, a conduit and a spirit translator, although I’m getting fairly good at some of them, considering the short amount of time I’ve been at it. For some reason historical figures I read about seem to connect best with me. The spiritual growth in the last year has been an absolute explosion of love and light into a very dark year. And though it was such an awful year, I look back on it and remember all the love and grace that was shown to me. I have never felt more loved, protected and cared for.
So while I am disheartened with the amount of art I was able to put out last year, I AM very happy with what came in its place. I’m thinking of it as I took a year off from art to go have mystical, spiritual experiences, and hopefully now I can marry the two together better. I just need to find a new way to work in really short chunks instead of stretches of the afternoon so I can increase my art output. Then things will be much more the way I’d like them to be.
If I had to have such a crappy year to gain so much spiritually, I’ll take it. I don’t know if it was a direct trade or how it works, but I wouldn’t give up the new friends I have for anything. And I’ve found some really, really wonderful online communities who love me, support me, have my back, help me work through confusing things, answer my questions and reassure me that I’m always ok.
For anyone concerned, I have shared many intimate details of my experiences with both the wonderful Geoff and my excellent therapist and neither of them is concerned about my mental wellbeing. 🙂 Only loving beings are allowed to talk to me, and as I said, I feel much greater peace, security, love and support than I ever have.
Now on to this image… this might look like it goes against what I just wrote, but it’s inspired by someone else’s experiences, not mine. 🙂 Over Christmas, I re-read Demons in the Age of Light by Whitney Robinson, which I’ve read many times now and is a favorite for its beautifully poetic prose. Whitney’s memoir is about a psychotic break she suffered in college, where she felt like she was possessed by a demonic entity but everyone diagnosed her as schizophrenic. Her journey back to wellness is haunted by the ever-present question of if she’s experiencing something mental or spiritual, and the answer is often allusive and not nearly as clear as you’d think.
“The sentience envelopes me while I sleep… I awaken with a gasp in a strange bed. No, it’s not the bed that’s strange – it’s the same one I’ve slept in since I was a child…
The strangeness is that I am not alone, here in my bed. I will never be alone again.
I feel it slithering out of the darkness for the first time, the presence that’s been whispering its sinister enigmas. A living, breathing thing – cold stars and glittering mathematics with the inhale, hot copper and rotten fruit with the exhale. Foreign from anything I have ever known. Other.”
I loved how the usually comforting, loving idea of never being alone has been turned in this passage into something deeply wrong and full of dread. I wanted to try and capture that feeling just before she was overtaken by the being she calls the Other, of knowing the possession is imminent and you are helpless to stop it. And of course I used my favorite little lamp to light the scene, exactly as it’s shown in the image.
I wasn’t planning on uploading this on Valentine’s Day, but I suppose it does make a dark, sinister anti-Valentine’s-Day image, haha!
Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject. If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see. If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them. Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses. This is by no means a comprehensive list, just a few examples.
According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible. This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general. If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?
That’s why May 12th is so important. We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to. Awareness is the critical first step in any change happening.
Why is it so important that we treat ME? What makes our disease so special?
It can be fatal. People die from this. If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.
No one should have to live like this. As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell. Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die. It takes away the plans you had for a normal, fulfilling life. Careers, hobbies and passions are taken from you. You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything. (More on brain fog later.)
We deserve to live happy, fulfilling lives, just like everyone else. When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself. And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before. On a good day for me, it’s like how other people when they have the flu. A constant, crushing weight that makes the slightest exertion a Herculean effort. On bad days all I can do is lay in bed and drag myself to the bathroom periodically. Sometimes even feeding myself is a challenge. I might have to choose between feeding my animals or myself, because I don’t have the energy for both. And of course the animals always win; they’re my responsibility.
I am mostly house-bound and I require help with the sort of tasks I used to take for granted. Forgot something at the store? No problem, just go back tomorrow! Nope, not with ME. Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it. If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least. (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.) When I do gather my strength to photograph models, that is my exertion for the entire week at least.
ME is extremely isolating. You can’t just go hang out with friends. You can rarely make it to family functions. Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today. I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.
ME is vengeful god. If you violate any of its insane decrees, you WILL be punished. Probably for a long time; sometimes forever. There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it. At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too. Damned if you do, damned if you don’t.
Right now ME received approximately 5 million dollars a year in funding from the US government. To put that in perspective, that’s about the same amount given to researching hayfever. Male pattern baldness gets at least four times as much. HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount. I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should! What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.
This year I decided to do something that was a big stretch for me physically. I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME. Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head. But I’m not sorry. It was worth it.
Oh yes, brain fog. (Which I’ve got a bit of as I’m writing this.) It’s like when you have a fever and can’t concentrate or think clearly. Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language. Most days it’s more like mentally wading through a bog, at least for me. I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst. I think it will be obvious how I incorporated that element into the images.
I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well! I want you: you, who are reading this right now, to #GoBlue4ME! Why blue? Because that’s our disease’s awareness ribbon color. What does “going blue” mean? There are any number of things you could do to go blue. I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!). You are more than welcome to download them and use them however you’d like! You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts. You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!
For makeup artists, I’m issuing a special challenge. As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look. Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING. I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag! If you’re on YouTube and create makeup tutorial videos, this would be perfect for you. There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend! You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!
I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same. And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂 Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!
Ready to see the video and my images? Here you go! I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.
And please, pass these around! Share the links, video and images with anyone and everyone! We have to make a lot of noise to get the change we so desperately need. You have my full permission to share far and wide!
And please, if you take up the #GoBlue4ME challenge, let me know! Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!
One last note, your going blue does NOT need to happen on or before May 12th. Keep doing it as long as you’d like to! The longer we can keep the word spreading, the better.
Thank you to absolutely everyone who has and will participate in this! You are helping so many more people than you know. I thank you from the deepest wells of my heart.
Download these images and make them your profile photos for a day!
*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate. You’ll find as many different opinions as there are sufferers. It is my personal belief that they’re probably all the same thing, or at least all very closely related. Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with. I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]
This was one of those self portraits that I just HAD to shoot RIGHT THEN or I was going to explode. It’s actually been a pretty rough couple of months; I’m fighting my way out of another bout of depression that came on for seemingly no reason. This does happen periodically, so I tried to just give it time and let it pass, it always will eventually… but it’s been clinging like it hasn’t in a long, long time.
As depression progresses, it gets worse, not just additionally, but exponentially. You can very quickly move from, “Ok, I don’t like this, but I’ll get through it soon,” to “Oh my god, this is going to be the rest of my life, I will never feel joy again ever; what’s even the point of living??” in shockingly short time.
For me, one of the best tools I have against depression and slowly losing my will to live is creating art, especially art that expresses how I’m feeling at the time. It’s incredibly cathartic. Working on this self portrait has been a huge help in keeping me sane lately, but the pessimistic side of me wonders if I’ll just be left right where I was before I started it, once I’m totally finished creating it. I suppose that even if it does, I’ll at least still have a new image in my roster. It hasn’t helped my depression to know that it’s been so long since I released any new images (there are far too many reasons to get into right now, but it’s been incredibly difficult to find and make time for art lately).
I was thinking about what I would say to accompany this image, which (probably obviously, belongs to both my DreamWorld and Eternal Storms series) and pondering how to explain what long-term clinical depression feels like to those who haven’t experienced it. It’s not the same as just being sad or upset, it’s a stain on your soul which you can’t ever blot out. Out, out, damn spot. A stain which not only looks ugly, but spreads like a cancer and does you actual harm, emotionally, physically and mentally.
Depression, especially when it gets really bad, feels like your brain is beating and gang-raping your soul every day while the rest of the world goes about their business, either not noticing, or at best stopping to take cell phone videos of your torment, but offering no help. And much like the unjustified stigma and shame victims of abuse feel, people who have trouble with depression and who don’t feel excited about being alive are often subject to the same kinds of judgements. We must enjoy wallowing in our own emotional filth, or else we’d just get up, dust ourselves off and go be happy, right? Or, ok, maybe it’s really a chemical imbalance thing; so just take an anti-depressant and let’s all get on with our lives, all right? And she was wearing a short skirt, so she was asking for it.
I wish it worked like that; I wish it was that easy. I can’t recall how many medications I’ve tried, not to mention the far, far greater number of alternative healing treatments, supplements, and anything else I could think of. Some help more than others, but so far nothing has completely cured me.
For anyone wondering, no, I do not believe this bout of depression is really related to the ME. The ME has been about the same as it has been since my injections kicked in, so there haven’t been any recent changes on that front. It definitely doesn’t help anything, but I don’t believe it’s the cause.
Depression lays a gray film over your life. Everything appears bleak and hopeless. There’s no point to trying, no point to doing anything. And there’s also the honest, nothing-to-do-with-depression frustration of having to be your own guinea pig as you try different treatments, often with horrible, horrible side effects, which may or may not stop after you discontinue the medication. It’s been recommended that I add a psychiatrist to my team of doctors (I have a wonderful therapist, but she’s a psychologist, so she can’t prescribe medication) which I’m not looking forward to. My depressive mind doesn’t want to go through the bother of more appointments, more co-pays, more explaining my symptoms and feeling judged, more trying new medications will probably make everything worse before it even might get better. My rational mind says I should try it anyway, but I’m not looking forward to it.
So, back to talking about this image. I chose the title even knowing it might ruffle some feathers, because I honestly don’t feel like there’s a better way to explain it to those who have been fortunate enough to never be so depressed that they feel they can’t go on another day. It is your mind raping your soul, verbally abusing you, telling you you’re worthless, a horrible person, undeserving of love or bothering another person by asking them for help. It’s a prison only you can see and feel; a prison you both hate and are afraid to leave, because it’s all you’ve known for so long. (My first memories of what was clearly depression are from my early teens, but I wonder if the terrible anxiety and nightmares I endured since I was a very young child were a precursor to this. The first time I gave serious thought to killing myself, I was 17.) A strange Stockholm-like syndrome can develop where you long to escape, but are afraid to. However, I hope it’s clear that I am in no way trying to take anything away from the trauma victims of the “regular” kind of rape suffer from. Though our hells overlap in some ways, they are not identical.
I liked the idea of using “rapeseed” in the title, not only because it catches the ear, but because I feel it works on a metaphoric level. Rapeseed is a plant which grows beautiful yellow flowers; it belongs to the mustard family from what I’ve read (and apparently the name has to do with the Latin word for root vegetables and nothing to with an act of violence). Kirsty Mitchel shot part of her Wonderland series in front of a breathtaking field of rapeseed flowers. It is also, apparently, what canola oil is made from (or at least used to be? I’m finding mixed info), around which there is some controversy if it’s truly safe for human and animal consumption. The word at once touches on horrible, horrible acts of violence and abuse, potential danger but still has immense beauty to offer the world.
In this image, I imagined a beautiful, unicorn-like creature, someone that would look completely pure and innocent, someone who looked like that would never have had a single bad day. And I just poured my emotions into the shoot, letting them all out. I’ve already said it was cathartic, but I can’t stress just how much it was. I felt lighter that day than I did in a long time. Even editing it was therapeutic. Some images seem to fight you the whole way, kicking and screaming, into what you want them to be; this one felt like it was actively working with me to help me achieve my goal. It’s one of the most gratifying feelings when art flows like that.
I have been studied makeup application a lot recently (mostly for upcoming images) and this was one of my first times being able to test just a little bit of my new knowledge out. That was fun, although tiring. But I’m pretty pleased with my first attempt at being a makeup artist! I had to search high and low for some cosmetic-grade silver glitter of the right size and color to make the glitter-tears; you really wouldn’t think it would have been so difficult, but it was! I eventually found some on either eBay or Etsy; I’ve bought some from both and now I don’t remember where this particular one came from. I already had the silver wig, so I just grayed up my eyebrows to match it better. I used Nyx’s Jumbo Pencil in Milk for the entire eye/cheekbone area along with a nice matte white eyeshadow from BH Cosmetics pallet, along with two shades of lavender and a darker purple in my crease and as blush. I contoured with another Nyx product, an eyeshadow in Taupe which is perfect for my pale skin (even paler here, so I used a very light hand). I highlighted cheekbones, lids and inner corners with Deviant Cosmetics Ghost Violet, which is just about my new favorite thing ever. It has the most gorgeous flash of purple when the light hits it, and Deviant Cosmetics has four or five colors in their Ghost line; I recommend them all! (If you’ve been eyeing the Kat Von D Alchemist Palette but don’t have the money, go see Deviant Cosmetics. Their colors are brighter, more vivid, they carry one more color than comes in KVD’s pallet, and it’s WAY less expensive! And since it’s mineral makeup, there are no weird or harmful ingredients to worry about.)
After I did my makeup and looked utterly insane in person, I set my camera up and a couple lights. I actually really hate setting up lights, so I always try and make it as minimal as possible. Luckily, this shot didn’t call for anything fancy, so I got away with only two. I taped some white, mesh fabric to the inside of my front door, and it gave me a lovely, neutral whiteish backdrop that wouldn’t distract from the main subject. I was nearly done shooting when I remembered I’d intended to wear my unicorn horn circlet from Firefly Path! I quickly shot a few more images with it on, tipping my head at different angels and planning on adding it on to the final image in post, which I did. (This is not the exact circlet that I have, my horn is silver and the crystals are lavender, but this seems to be the only one in her shop at the moment.)
Unicorns represent a lot of things to me, but innocence and purity are two big ones. If a human is sad, well, that’s… sad, but normal. If a unicorn is sad, it’s tragic. That there could be anything their magic couldn’t overcome underscores the power of whatever is causing them pain. To me at least, that emphasized the magnitude of the power depression can hold over you. The working title for this image as I tinkered on it was Sad Unicorn, because that was all I could think of when I needed to save the file for the first time. It still feels appropriate in a way.
I added the trees and birds on the background, as if perhaps the unicorn girl is longing for her forest home. I specifically chose to add crows, both because they’re one of my favorite birds (did you know they actually make and use tools and are incredibly smart?) and because Native American legends say they escort one’s soul into the afterlife. That felt very fitting giving the subject of the image. She seems like she’s in an alien land, somewhere she doesn’t truly belong, which is how I’ve felt about my time on earth just about every single day since I was born. I knew this was not my true home. My true home is where my soul resided before it decided, for whatever insane reason, to incarnate into this life. In a meditation, months ago now, I actually visited what I consider to be my true home and I sobbed and sobbed, because I was so glad to be back, even for a moment, and also because I knew I couldn’t stay. That place, that timeless, unchanging Home, is where this ethereal creature belongs too.
Now that I’ve gone on for probably far too long, I’ll finally show you the image. I felt it was very important to explain my reason for the title I gave it to give people a way in to understand it. And for anyone concerned about me, thank you, but I’ll be ok. I’ve been through worse. And I didn’t even have photography back then. I have an excellent support system, which I didn’t have nearly as much of before, including my really incredible therapist. All that said, let’s get on to the first image I’m releasing this year!
Lastly, I don’t enjoy talking about my mental health (or lack thereof) to strangers on the internet, no matter what impression this post gave you. I speak candidly and openly about it because we NEED to end the stigma around it. And the only way for that to happen is for those of us who struggle with it to speak about our experiences. A lot. In detail. Repeatedly. I do think things will change eventually, but it will take a lot of voices speaking honestly, blatantly, about it. My voice is only one drop in the ocean of voices, but to quote Cloud Atlas, what is the ocean but a multitude of drops?
I’m sure everyone reading this has had times when they felt like the often cited square peg in a round hole. It’s a pretty universal human experience. And, of course, we shouldn’t all fit neatly into every hole society expects of us. If we did, there would be no one to rock the boat, to bring about desperately-needed change, no inspirational leaders, no one going against the flow and showing us we can do the same.
We need those people who obviously, obtusely, refuse to contort themselves into whatever-shaped hole is expected of them. We need our spiritual leaders, those who bring about social reform, who call out those in power and refuse to let injustice stand. We need artists and creatives who show us with words and paint and dance and pixels how the world could be different. And we need them all to help us make this possibility a reality.
It feels cliche to say this as an artist, but I have always felt different from most of the people around me. I rarely felt like I fit in, except for with the occasional kindred spirit I would meet, shining like a beacon in the night. Those other beautiful, misfit souls who also felt like they didn’t belong; when we were together, suddenly, we did belong. And I am very lucky to have married such a man! Having just a few people like that in your life, people who truly understand you and appreciate you for you you are right now in addition to what you might be can make all the difference in the world. It can be the difference between life feeling like a desert wasteland or a lush garden, full of birds who eat from your hands and fawns who curl up on your lap like a Disney movie.
Humans need to feel understood, to find their tribe. I am very grateful to have found so much of mine, both online and off!
This square hole is in my mother-in-law’s house and usually houses a very handsome metal owl sculpture. She was kind enough to let me move the owl and Geoff was sweet enough to help me shoot with self portrait in it (along with a number of other self portraits which I’ll eventually get around to editing). He was also in charge of making sure I didn’t plummet to my death; one side of the hole is about chest-high on me, on the second story of the house, but the other side opens into the main living room, probably 20 feet high. I am quite scared of heights, but I will brave a lot that I wouldn’t normally endure for the sake of art… especially if Geoff is there to make sure I stay safe. 🙂
Don’t worry if you feel like you don’t fit in. You will find your people. And once you do, the whole journey will feel worth it. Dance to your own drummer. Break out of the mold people try to put you in. Live your life authentically, because you’re the only one who can.
I have new images for you as well as some updates about my personal life! Since most of my personal life ends up coloring my images in some way or another, I suppose that makes everything relevant, right? 🙂
I recently had a shoot with a model who was new to me, the lovely Teri Wyble! Sadly for me, she does not live in Los Angeles, but she does travel here now and then and we’ve already made plans to do more shooting next time she’s in town. She was such a joy to work with; she’s not in modeling just to look pretty or puff up her ego, she’s interested in telling compelling stories. She has a natural grace and beauty which lend themselves perfectly to my kind of photography. On top of that, Teri is also just a really wonderful soul, full of love and kindness, and we share many of the same interests. It was a perfect collaboration!
I’m also going to be sharing a bit of my spiritual journey with you guys here. For anyone who’s curious, I am a lightworker, but I don’t define my spirituality much beyond that. Organized religion does not work for me, but I know many people who love their branch of it. If it’s a good fit for you, stick with it! If not, you’re still ok and you can still be a spiritual person.
I believe in an unconditionally-loving higher power, which I like to refer to as Source. “God” brings to mind all sorts of connotations which I personally find hindering. I believe that everyone and everything is made up of energy, as physics teaches us, and since energy cannot be destroyed, it’s most logical to me that life continues beyond death. I have no doubts about this. I have spoken to and had contact with those who have passed over… which would have been enough on its own to convince me of our eternal life, but I do feel science supports this idea as well.
Toward the beginning of the year, I experienced an EXTREMELY powerful guided meditation with a lovely woman named Mojo. If you’re interested in her services, you can find her page on Fiverr here! She currently doesn’t advertise her guided meditations, which she does live over the phone with you, but if you contact her, she can arrange it for you.
During this guided meditation, I actually got to meet and speak with my two main guardian angels. Prior to this, I had believed in angels in a vague sort of way, but despite how much I would have liked it, I never felt that I could successfully connect with any of them. I have also done other guided meditations which are supposed to introduce you to your angel without much success other than feeling more centered afterward, like with any meditation. My point is, the meditation with Mojo was very different. I could actually feel and sense my angels; I could hear and even see them in my mind. I know now that they have always been with me every second of my life, and they will for the rest of my time on earth. I am never alone and they are a great comfort to me.
This new connection with my angels led me to buy a handful of books about angels; I wanted to learn EVERYTHING that I POSSIBLY could about them! As I’m sure you all know, my passions are all-consuming. When a new one ignites, my life becomes focused on that and only that until I feel I have a grasp on it. For anyone else interested in learning more about angels, I recommend Angels In My Hair by Lorna Byrne, and The Angel Therapy Handbook by Doreen Viture. Both are fascinating, well-written and impart excellent knowledge. Angels In My Hair is more of a memoir while the Angel Therapy Handbook is more of a textbook. I feel they compliment each other well.
I mentioned being a lightworker a little bit ago. What I mean by that is that I am certified at level 2 in Reiki. I do energy work, sending positive energy to people, animals, places, situations, objects, whatever you want. It’s healing and can never be used to harm. I also began meditating much more regularly this year. In the past, when I’d try meditating, I would always enjoy the effects of it, but I had a lot of trouble making myself do it with any consistency. I’m not sure what changed, but for some reason, this year I was able to push past that. Once I got over that initial block, I discovered that I LOVE meditating! It’s incredibly healing and healthy for your body, mind and soul. I found it was a bit like starting to work out. At first, you don’t really want to do it, but after a little while of making yourself stick with it, you like it and actually begin craving it. I now have meditation (guided and not) as a regular part of my life and I’d highly recommend it to absolutely everyone! One thing I discovered are the millions of meditation tracks on YouTube; literally something for absolutely everyone and every interest. There are also long tracks of nature sounds and/or music, some with binaural beats in them, some lasting up to eight hours, so you could listen to them all night while you sleep. I’ve been learning a great deal about crystals as well from my dear friend Jessi who owns the shop Mineralism Crystals. I HIGHLY recommend her if you’re in the market for anything! Even if you don’t see something in her online shop, chances are, she has it. I’ve placed numerous orders with her and they always exceed my expectations! Also, she is a fellow spoonie, so your money goes to help support her as she’s unable to work a “regular” job; win-win!
As all these new revelations were opening up to me, meditation, angels, being able to “hear” animals more clearly when I contacted them energetically (for example, I was able to help one very special cat overcome his abandonment fears when he was newly adopted, something I was honored to have been a part of), Teri came along and we had our shoot. I knew that I wanted some of this deeper spirituality to be reflected in something we shot, but I wasn’t really sure how. However, I did know that I wanted to photograph Teri in a beautiful lace dress I had… that combined with feeling inspired by some images Geoff shot recently with a back-lit model that made me decide I would shoot an “angelic” look with the gauzy white fabric and light behind her. (Although really, just try and make her NOT look angelic; that would be a far more difficult job.)
As I suspected, Teri made the perfect angel. Sorting through the images later, I realized that I was creating a new race of DreamWorld beings. The Aethereans, as I called them, are DreamWorld’s angels. They live high in the mountains, away from the more populated areas so they can be focus on devoting themselves to spiritual studies. They are very wise from their decades of pursuing the truth in every facet of life, as well as skilled and compassionate healers. Many of the other DreamWorld inhabitants send their young to train with the Aethereans for several years, where they are taught empathy, love, plant and animal care, healing, sacred geometry and the mysteries of the universe. I thought that the Aethereans needed some kind of uniform or mark that visually informed everyone of who they are and the spiritual life they have chosen for themselves, so I decided they would all have a flower of life symbol on their foreheads. I wish I’d thought to actually apply this in real life to Teri, but this idea only came later. Thankfully, Photoshop made it possible to add it to all the images!
Teri did such a spectacular job modeling, she made it so very difficult to choose which images to work up! I ended up editing quite a few more photos than I typically would pick because I simply could not narrow my selections down any more. It took a bit longer to finish these because of the volume I had to work through, but also because of a couple other wonderful new journeys I was taking…
Through a very miraculous series of events, I discovered Calista Ascension. Calista is one of those very rare spiritual teachers who actually embodies and lives everything she preaches; I have met very few more accepting, genuinely loving and wise people in my life. She offers numerous classes which I was lusting after, but when I saw that she created her own Unicorn Healing System which I could take online from the comfort of my home, I was hooked. I had to take it. Immediately.
I’ll let Calista explain the course in her own words:
Unicorn Healing™ is a hands-on healing modality for empowerment and wellness, but also a development tool that can awaken your Souls’ gifts and purpose. It can be used as a stand-alone therapy or complemented with other energy practices.
Brought forward in 2009, direct from the Unicorn realm via Calista, it is a very sacred modality that can provide all that you are ready to receive.This is a course for those who are ready to step-up, break-through and arise in their POWER!
Just as you have a Guardian Angel that walks with you so to you have a Guardian Unicorn. Once regarded as the fabric of fairytales, Unicorns are very much real. They have walked with us since the times of Atlantis and are now returning to our awareness to help us awaken to love and the infinite potential we hold within.
As this is a distant learning course, you can set your own pace and progression. A commitment is required however as this course is deeply transformational – the more you put in, the more you will receive. The Unicorns are ever-present to those who wish to better themselves and assist Mother Earth to ascend with grace.
Yes. Unicorns. REAL Unicorns. As I mentioned earlier, I am well-versed with Reiki energy, which, I learned, is apparently an earth-based energy. The Unicorns however hail from another planet (bear with me here) so their energy is cosmically-based. (For those interested, Calista recorded an excellent podcast all about who and what the Unicorns are, where they come from, etc, with much more detail than I’m giving in this post, which you can listen to here.) I hadn’t expected their energies to feel particularly different from each other; I just hadn’t thought about it. You may believe that these Unicorns are simply a pretty fantasy I’m escaping to in my imagination (which I’ll freely admit is an escape I would likely pick!) but OH MY GOD – once you’ve felt their energy, there is NO mistaking them. They are every bit as real as we are, and their energy is incredibly powerful… yet also full of the most unconditional love I’ve ever experienced. It’s nearly impossible to describe how energy feels in words, but the ones that keep coming to mind when I think about my Unicorns are high, clear, clean, bright, powerful, silvery, shimmery, penetrating, deep, beautiful, wise, loving, celestial, ethereal, and immense. I love Reiki, but the Unicorns really kicked things up a huge notch for me.
As part of my studying, I went through an attunement with their energy, where I met my three guardian Unicorns, who all serve different roles, and who are all equally exquisitely beautiful. I spent 30 consecutive days meditating and communing with them every day in different ways so we could really get to know each other. And I also practiced doing healings with the Unicorn energy, both in person and across distance, much like you do with Reiki. The Unicorn healings I’ve done so far have been the most powerful I’ve yet witnessed in my life. Problems that have bothered people for very long times suddenly lose their sting, allowing the people to let go of them. Hurts are overcome, trauma is healed. They are truly miraculous. And my guides assure me that I will become physically healthy myself in time.
My guides… yes, I should mention the other guides too. Meeting the Unicorns as well as my angels has opened my mind up to the idea of there being more spiritual guides for us in the universe than I had previously realized. Currently, in addition to my guardian angels and Unicorns, I also have a dragon guide, a pegasus guide and a mermaid guide, although I have not worked with them nearly as long or as deeply as the Unicorns. I’ve also started to sense and sometimes communicate with the elementals all around me. The trees in my yard, for example, will remind me if the bird feeder has gotten low or the plants need watering. I’m becoming a MUCH better gardener with their help! 🙂
Then, right on the heels on my finishing up my Unicorn Healing course, I began taking Doreen Virtue’s Fairyologist course! This is more or less what it sounds like; you learn all about the various fairies that exist, what they’re about (the fairies are mostly concerned with environmental and animal issues, but certain groups emphasize different causes), how to communicate and work with them. At the end, you take a quiz and, assuming you pass, you become a certified Fairyologist. As I’m also in the process of having all my Unicorn work reviewed by Calista as we speak, I’m on the cusp of becoming both a certified Unicorn Healer and a certified Fairyologist… both are NOT things I expected that I’d be saying if you’d asked me at the beginning of this year!
I’m telling you guys about all this for several reasons. One, working with my guides and walking my spiritual journey is becoming an ever-more-present, ever-larger part of my life. I wanted to just lay it all out there in one go and not feel like I had to tiptoe around it on my own blog. Two, everything in my personal life effects my art. Case in point, the images I’m releasing today. I probably wouldn’t have even shot them if I hadn’t met my guardian angels, and I certainly wouldn’t have added the Flower of Life symbol to the Aethereans (who would not exist) without having learned more about sacred geometry in my studies. In my life, there is very little separation between the real world and my art. It’s all one big pot of stew where each ingredient enhances all the others.
And lastly, I’d like to invite all of you to explore your own spirituality. When you find what works for you, there is very, very little in life that is as rewarding! There are many charlatans both online and off, so you must be discerning in who you choose to listen to. A strong connection to your intuition and sense of truth will help you navigate the waters. Any of the people or authors I’ve mentioned in this post have gotten the thumb’s up from me if you’d like to start there!
I am an energy worker. I work with Unicorns and angels. I talk to animals, fairies and elementals. I am a creator. I collect crystals. I am an empath. I am a photographer. I am clairvoyant and clairsentient. I am a fulltime student of truth. I am a healer. I am a woman. I am an artist. I am Sarah. I am me. I don’t apologize for any of that. You go be you, and don’t apologize for any of it either. 🙂
This image is a little bit “out of order,” so to speak. The Apprentice is, obviously, an apprentice, but to someone you haven’t met yet, although you will. In an ideal world, I would have shown you the Apprentice’s mistress first so it made more sense why she is out collecting herbs and plants and other ingredients, but you’ll have to just trust me on this for now 🙂 Hopefully I’ll be able to show you her mistress soon, but that’s going to be a pretty complicated shoot.
This image is extra special because it features a new model for me, Noemi Regalado. Noemi is not someone who actively pursues modeling like most of the other people I work with. She happened across my work and sent me an email asking if she could be a part of it. Of course I said yes! It took us a little while to find a time to shoot (which was all my fault; I think she first wrote me right around the time of my first sinus surgery and we know how that turned out. And it seems nothing has calmed down since then!) but eventually we got a time set that worked for us both.
In a way, I’m a little glad that we had a few months to email back and forth and get to know each other a little more before the shoot although I’m sure the wait was maddening for Noemi! (She will probably deny this because she’s very laid-back and easy going, but still. Waiting sucks.) In the course of our email exchange I learned that she has had her own health battles despite only being about the same age as I am. She is a cancer survivor, currently completely in remission, and I suspect that she will stay that way. She is a gentle soul but I know she fought that cancer out of her body. She also participates in mud runs, something I probably would never have had the endurance for even before ME, and since her apartment only allows very small dogs, she volunteers regularly at a German Shepherd rescue group. Every couple weeks she goes down, takes a dog out for a nice walk, socialization and a whole lot of love. Then she repeats the process several times. If that’s not one of the best examples of making lemonade from lemons that you’ve heard, I don’t know what to tell you 🙂 Shelter dogs have SO MUCH up against them, even the smallest gesture of love and attention can go a long, long way toward helping that dog find his or her forever home. And so far she has been directly responsible for at least one Shepherd finding a home with a friend of hers! I’m sure there will be more.
As you can see, Noemi is a very cool chick! I wanted to come up with some concepts for her which would fit with her personality and her willingness to get uncomfortable and messy for a photo. We ended up shooting two concepts; this first one that you’ll see today, as I said, is a DreamWorld image, and the second one, which I have not yet edited, will show off her willingness to do what it takes to get the shot. And I have to say, she was a great model! She took direction very well and had a better knack for it than some “actual” models I’ve come across 😉
So, let me tell you a little about making Noemi’s mask/headdress for this shot! It all started with this lovely purple mask which I found at Rite Aid, of all places, on one of my many, many trips there to pick up prescriptions. The color really caught my eye, I thought it would compliment Noemi well and I also noticed that it was less expensive than the completely blank, white masks at the craft store! And no built-in swirls with the blank white masks either. So that was a pretty easy decision to buy it.
Trying on the mask for research, NOT just because it was fun 🙂
But of course it can’t just be a basic mask, even if it looked very pretty in its basic form. The first thing I did was cover it with a layer of lace, which happened to be a remnant cut from my wedding dress (because, surprise!, it was too long ;)).
After brushing on a layer of fabric glue, I started with a layer of EXTREMELY glittery purple paint.
It doesn’t look interesting wet…
But it dries into a really stunning color!
Then I did some trimming on the lace to get the edges to match those of the mask itself.
At this point, I knew I wanted to put some leaves and flowers on it, but I didn’t know much more than that. So I dragged out my fabric stash (what you’re seeing here is what I’d been able to buy during a HUGE sale!), my glue gun and just started messing around.
I knew I wanted to extend the sides of the mask with leaves, so I started there. Maynard helpfully modeled this part for me.
Maynard is an awesome model, even when he’s not facing the camera
You can also see that I’d added a bit of black ink around the eye holes, rather like eyeliner. Just a subtle touch to help draw the viewer’s eye since there was going to be a fair bit going on.
I just played around with different colored flowers and shapes, holding them in place, tweaking things here and there and then suddenly I had a finished mask! I hadn’t planned on giving it so much vertical volume, that just sort of evolved naturally, but I liked how it looked so I went with it. Some costumes I have planned out in precise detail before I ever start them, but others are more free-form, like this was. Always listen to your gut 🙂
A mask! Photos from here out are taken in the bathroom to protect it from over-eager cats.
As I looked at it the next day, I felt like it was 95% there but it needed… something. I didn’t know what. I mulled it over and when I woke up the next morning I knew it: mercury silver spray paint.
Krylon’s Looking Glass spray paint is no ordinary silver paint. It has a truly magical quality to it and I end up using it in almost every costume or prop I paint. Just the slightest mist gives it a mysterious, magical, ethereal touch. I try to always keep a couple cans on hand because I never know when I’ll suddenly need them.
So that morning I took the mask outside and let the paint gently kiss the mask; just enough to give it that magical feeling without taking away the beautiful colors of the paint and flowers. In the photos below (which are a little blurry, sorry, they were taken on my phone) the top photos show details of the flowers unpainted and the bottom have had their silver wash.
Flowers with and without Looking Glass paint
I filled a basket with appropriately magical-looking items and herbs but it didn’t make it into the final image. Oh well. You can see just a little of the vial necklace I made full of purple stones and beads and the gorgeous amulet/brooch. Jewel tones just loved Noemi’s beautiful skin tone!
And now I’ll let you see the completely finished image along with some detail shots! The show trees had just started blooming in the woods and the wild queen anne’s lace was bountiful. Both made a beautiful, more neutral backdrop against Noemi’s vividly colored mask and costume.
Thanks to Noemi for being so patient through all this! I’m very glad to have made a new friend though all this 🙂 And I’m very happy with how this turned out! You’ll all just have to wait a little while longer to see the image where Noemi really proved her devotion to the finished image 😉
Tomorrow I go in for my several-times-a-year nerve-blocking injections. My pain specialist doctor locates the nerve clusters which are causing the most ruckus and injects them with a numbing medication which quiets them down for a while. I end up having to do this about twice a year. It’s not very pleasant; I’m fasted and I have an IV, but at least I’m (usually) fully sedated for the injections themselves. With a previous pain doctor, I woke up during the procedure once and it’s not something I’d like to repeat. They tell most people that they can go back to work the day after their injections but, as usual, I am not most people. I usually end up pretty well bed-bound in pain for about 10 days after them, and I’m still tender for a while after that. We’re going to be doing some extra sites this time so I imagine it might make my recovery a bit less happy than usual even.
But even with the intense recovery period, which Geoff helps me tremendously with (he gets me anything I need, yells at me to lay down unless I’m getting up to use the bathroom, we watch endless movies in bed, he fetches me vegan donuts to break my fast, he makes sure I have plenty of food and water at all times and I’m as comfortable as possible), they do help. The pain never completely goes away, but it knocks it down several numbers on the pain scale after my body settles down. Wish me luck tomorrow! Right now I’m just looking forward to having it be over; I’m done with anticipating it.
I’m very excited to announce that I will be featured in a local gallery, the Creative Arts Group! The show will run for almost nine weeks, from June 6th through August 5th. They will be showing eight of my DreamWorld pieces, with models Dedeker Winston, Katie Johnson, Dan Donohue and Travis Weinand. This will also be the first show that I’ve been able to use my fancy new printing paper for; Hahnemuhle fine art pearl paper (provided by the truly excellent Lauren from POV Evolving printers in downtown LA). It’s quite spectacular looking!
In addition to the images, they will also be displaying costume pieces and props I’ve made for the images, including the entire flower-festooned Spring Faerie costume. This is always how I’ve envisioned DreamWorld images being shown, with the costumes and props alongside the finished images.
They will also be showing A Poisoned Sleep Of Kissless Dreams, my very latest image and one I’ve spent almost two years working on, and one which you can still win your own print of!
A Poisoned Sleep And Kissless Dreaming Sarah Allegra – model: Katie Johnson
I’m planning on being there the first Saturday of the show, June 6th, from 12-2 for a short opening reception if you’d like to stop by! If you do come by, firstly, thank you, and secondly, feel free to mention to the gallery staff that you’re there to see my work 🙂
Many, many thanks to everyone for your help and support along my art journey, whether you’re able to come to this show or not! The gallery info is below. I hope to see you all there! 🙂
Lastly, don’t forget that there is still time to enter my ME-awareness-raising print giveaway! Just check out my previous post for info on how to enter. It’s easy and FREE! The Yellow King will be angry with you if you don’t enter the giveaway 😉
I’m so happy so many of you have joined in my print giveaway! There is still time for you to enter, which is free and easy to do! Scroll down below for details, but most of the ways you enter are simply by sharing/retweeting messages onto various social media outlets – all of which are now embedded in this post! Just head down to the very end and you’ll see all the different ways you can participate without even leaving this page!
If you missed my last post, let me summarize it for you. Today, May 12th is Invisible Illness Day; a day we dedicate to raising awareness about illnesses and diseases which can be deadly and have devastating consequences, yet show little to no outward sign. Every single person with any of these illnesses, such as fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, (and, of course, myalgic encephalomyelitis, or ME, which I have*) has been told at least once, “But you don’t look sick.” As if that invalidates our decades of suffering. Oh, I’m sorry I didn’t meet your criteria of what a “chronically ill” person looks like; you’re right, I’m 100% fine! In fact, I’m going to go complete a decathlon, now that I know I’m healthy.
Ok, so clearly simply not appearing outwardly sick doesn’t mean we aren’t ill. In fact, most people who saw me on the street would probably assume I was a perfectly healthy girl; although one who doesn’t put a lot of effort into her appearance. The reality is that I am partially house-bound, I can only drive short distances on very good days, almost all “out of the house” errands have to be done on weekends when Geoff can drive and help me, I’m in constant pain and exhausted every single second of my life. My energy reserves are very low and I have nothing extra to spare on “getting pretty” before I go out. As long as I’m wearing actual clothes (you have no idea how many times I’ve almost left my house without key clothing items), that’s enough for me. Shove on a hat so I don’t have to address my naturally curly hair and I’m good!
While I never overly cared about what I looked like in public, I do find myself missing wearing pretty things. I put far, far more thought and effort into picking out my pajama outfits that my regular clothes outfits. I’ve accrued quite a collection of PJs at this point, so I can at least feel like those are cute and colorful.
While worrying about one’s physical appearance would seem pretty far down on the priority list of someone with a neurological disease with no cure, and it is for me most of the time, it’s a little more than that. It’s just one more tiny slice of normal life that chronic illness takes away from you; one more reason for you to resent it. I don’t actually want to wear the dresses getting dusty in my closet, I want the option to choose to wear them. That make seem like a small difference, but from this side, it feels big.
While I don’t feel like I can spare the energy for looking beautiful most of the time, beauty is still deeply important to me, and it’s important that I leave the world with more beauty in it than I found it. It’s like when you go camping with your dad; the camp site is going to be cleaner when you leave than when you got there (or at least, that’s how it was with me dad ;)). I’ve come to realize that beauty is a big part of why I’m so drawn to art and to create; it’s a very tangible way of leaving the world a little more beautiful. And in this case, it’s taking the hideous ugliness of disease and transmuting it into something lovely.
With that in mind, I want to introduce my latest image to you; the one I will be giving away a 10″ x 15″ print of on May 29th!
I spoke to you a bit in my last post about why this image is so special… and I’m going that a little bit again 🙂 For one thing, this is a DreamWorld and Enchanted Sleep crossover piece; the first image of mine which belongs equally to both worlds. It spoke to me on both levels, and when I was torn about which series to include it in, I finally decided I didn’t HAVE to choose and it could live in both. Because, while in some ways, DreamWorld is a bit of escapism and fantasy for me, it is not all sunshine and rainbows. Not many of its dark characters have been photographed yet, but they will be introduced over time. Even with their benevolent protectors, their King and Queen, the creatures in DreamWorld still have problems.
At the same time, it helps me to look at ME through the lens of myth and fantasy. Viewing it as a dragon to be slain, a mountain to climb, a thorn in my side to bear; they all help me live with the reality of ME a little more easily.
I have long felt a connection between the stories of Sleeping Beauty and my experience with ME. A poison, an enchanted sleep (giving birth to my photo series’ title), hope of an awakening under the right conditions… there is a great deal of overlap. With that said, let me show you the new image!
Now, this file ended up being a composite of… I don’t even know how many images. A LOT. To give you an idea of the huge scale of the piece, here it is with a normal, full-sized image from another shoot with Katie on top of it.
So, just roughly eyeballing it, I’d say this is, what, 5-6 times the size of an average image? And while my camera doesn’t produce the HUGEST files imaginable, this is still pretty darn big. It was such an enormous file, I had to wait until I’d upgraded my laptop before I could actually work on it. Any time I tried to edit it on my old laptop, it would crash my whole computer after about 10 minutes of work. With my new laptop, it only crashes every few days, and usually only crashes Photoshop, instead of my entire system. Much better 🙂 All said, this took almost two years from start to finish. I’d pick it up, do a little work, get overwhelmed and put it back down. Then I decided it had to be done in time for the giveaway, so that gave me the motivation to finish it up.
Katie really endured a lot for this shot, poor thing. The area I shot it in was a naturally ivy-covered area of my old yard… and unfortunately also FULL of spiders and spider webs.
I’d made a homemade spider repellent (nothing which would harm them, just something with tea tree oil to make the area less appealing to a few days) and sprayed it liberally around the shooting area in the days leading up to the shoot.
But despite it, it was a pretty intimidating place to ask any sane girl to lay down in, relax, close her eyes and pretend to be asleep. I promised Katie that I would watch for any spiders actually crawling on her and scoot them off. I promised no harm would come to her, and, bless her, she trusted me.
Now despite it being just covered in cobwebs and spiders, I ended up having to add all the cobwebs in Photoshop. I downloaded a special Photoshop bundle of brushes shaped like cobwebs, which got me started. It took a ton of manipulation of each little bunch to make it look like it way laying naturally over the different areas, adding light and shading to blend it in to the environment.
After I got Katie situated, I climbed up on a ladder and started shooting. But I quickly realized that the ladder wasn’t tall enough to get the framing I wanted, which led to shooting about a million individual frames which I pieced together in Photoshop, which is why it’s such a huge file. There were some challenges in making everything align since I wasn’t using a tripod, but it helped that Katie had trusted me so completely and was lying perfectly still.
I had also shot a purple smoke bomb pouring out of the bottle (separately from Katie, I didn’t think that would be good for her to breath) but then that ended up not really looking right either, leading to another element I had to create in Photoshop.
I always try to do as much work in camera as possible, but sometimes the real world just doesn’t accommodate you!
Katie’s bravery and willingness to do whatever it took to get “the shot” made me create this virtual plaque for her:
Thank you, Katie 🙂 This image would not exist without you. It’s one of my very favorite images and I’m SO happy we went through all the difficulties of making it, even though I wanted to tear my hair out at times!
Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.
And did I mention that this special new print is a $400 value?
Would you like to win this very special print for yourself? Instructions are below! If you already saw my first post, skip on to the info about how to enter, if not, please consider taking a moment to read it and see why I’m so passionate about promoting May 12th and my giveaway!
I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.
When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.
Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.
Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.
Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.
Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.
ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.
Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.
The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.
These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.
Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!
First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:
You have your choice here! You can either:
Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
(The Facebook and Instagram posts and tweets are all embedded at the bottom of this post to make things super easy – you can like, retweet or share it without even leaving this page!)
Like and re-blog this post if you’re a WordPress user
You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.
And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!
Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.
Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!
And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.
It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!
On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂
One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!
Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂 My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn! There’s also a whole section of ME-inspired images from my Enchanted Sleep series!
Through my Red Bubble shop I sell all of the following items with my images on them:
Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!
INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.
This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!
And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!
I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.
There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.
ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.
It could be your sister. It could be your boyfriend or girlfriend.
It could you.
How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?
No more.
We cannot let this happen to one more person. Too many have endured this already.
We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.
We just have to ask for it loudly enough.
Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.
And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.
[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]
May 12th is recognized across the globe as Invisible Illness Day. Though most people are unaware of its significance… which is part of the problem.
It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome, rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others. Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show. They can be completely disabling, and the patient still looks “normal” to the world.
And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*
What ME is –
I’ve spokenquite a lotabout MEon my blog, so a lot of you probably know the basics of it. But for anyone new, here’s a quick summary. ME is a neurological disease defined, in part, by:
Profound fatigue which is unrefreshed by rest and sleep.
Chronic pain, which can occur anywhere in the body, but is especially common in muscles and joints.
Insomnia and other sleep disturbances, despite your constant exhaustion.
Post-exertional malaise (meaning you feel worse after you exert yourself — and the exertion can be as simple as a trip to the grocery store or walking to your mailbox).
Neurological problems, a.k.a. “brain fog.” This can manifest in the form of sudden clumsiness, tripping and falling, being unable to recall a word you knew just a second ago, suddenly forgetting how to read or write, forgetting your name… you get the idea.
Headaches of new or worsening kinds (I never had migraines until ME started sinking its talons into me).
Dysfunctional immune systems (if there’s a cold going around, I will get it).
Hyper-sensitivity to any and all stimuli — I describe it as the volume in my brain being turned up to “11.” Noises are very loud to me, lights are bright, smells overwhelming… the scent sensitivity means that anything artificially fragranced makes me nauseated, but it has led to me find small, unnoticed gas leaks inside houses on several occasions.
Post-Exertional Neuroimmune Exhaustion (your brain functions worse in every way after even minimal efforts — mental or emotional efforts as well, not strictly physical ones).
Low threshold of physical and mental fatigue (lack of stamina) resulting in a substantial reduction in pre-illness activity level — things you did before you were sick are now out of the question.
And so on. Because ME affects every system of the body, in a way somewhat similar to multiple sclerosis, the symptoms can vary from person to person, but these are the classic signposts of the disease.
I have what would be defined as a “moderate” case of ME. A mild case would be someone who could still maintain a somewhat normal life, but would probably need extra recovery time after big events, help lifting heavy objects, etc. Moderate, like what I have, is someone who can’t work a normal job, is partly or completely house-bound, may not be able to drive and has a great deal of their life impacted by the disease. Their world becomes much, much smaller and quieter. Severe cases… you wouldn’t wish them on your worst enemy. These are people who are completely bed-bound, unable to care for themselves in the most basic ways, unable to tolerate any light, sound or touch. They lay in dark rooms in silence, often on morphine drips for their severe pain… and this can last for decades. It’s been described as “a living death,” and for good reason. It’s truly horrifying. This is often the time when patients try to take their own lives.
I would like to say that I spent a great deal of reflection on coming up with the idea of my bed being my kingdom, but it was more of a response to thinking, “Shit, I have this video… now I need a name for it…” But I think it holds true despite it’s spur-of-the-moment conception.
When you spend the vast majority of your time inside your house, it becomes your entire world. If, on a good day, I take Calantha for a walk around the block, I feel like a Viking setting off to explore new lands (but not planning on Blood Eagle-ing anyone). If my house is my world, my bedroom is my home, and my bed becomes my kingdom.
Though it is a queen-sized kingdom, it is a kingdom nonetheless. This is where I am most myself, most honest, most raw, most pure. I spend most of my time here, in my PJs, hair a mess and no makeup (because who’s going to see it, I don’t feel like putting it on, and I especially don’t feel like washing it off). This room is most set up for my comfort and is bent to my will. Why is there such a huge pile of stuff always on my nightstand, or next to my side of the bed? Because then I can reach it easily, no matter what state I’m in. Geoff’s side is spick and span, while mine is a crazy jungle, but that’s how it has to be. In this whole world of things which cause us pain and discomfort, we need there to be someplace that is designed for us. That is, usually, our beds. And in my bed, I rule.
Some people are surprised to learn I have a chronic illness, especially one which confines me to my house and bed so much, since I seem to produce a lot of art. It’s all the result of verycareful planning of everything. I keep my shoots very short and I plan several concepts I can shoot one right after the other while I have my model. My shoot is usually the only major thing I have planned for the week. Actually, it’s usually the only major thing I have planned that month. If we’re driving to a location, my model will usually drive us since I’m often feeling too tired. I try to bang out as many concepts as I possibly can, then I crash. Usually the next two or three days will be awful, and I will pay dearly for my shoot. But after that starts to wear off, I can sort through my images and work on editing them… which is only possible because I can do that with my laptop while lying in bed. If I had to sit at a desk, I could not be a photographer.
Using my laptop and my Wacom tablet, I can create art again. There was a while as I was getting sick where I was truly terrified that art would be taken away from me. In one sense, that did happen, since I had to put away the pencils and paintbrushes which became too painful to wield, but art abhors a vacuum as much as nature does, and photography quickly sprang up in its place, with help from my photographer husband.
Photography has given me a voice. But it’s more than that. It’s given a voice to all of us who suffer from these invisible illnesses. When I started shooting the images which would become a part of my Enchanted Sleep series, portraying what life with ME is like, I never dreamed that other people with illnesses would flock to it like they have. I unintentionally tapped into an underserved community, and those within it have made their approval loudly known. I didn’t set out to capture anything but my own experiences, but in doing so, I captured all of ours.
ME alone effects millions across the globe. There are millions and millions more who bear other invisible illnesses, and you might have no idea that they carry these with them everywhere they go. Most likely, you know someone with one of these illnesses, though it might be undiagnosed. Most of the invisible illnesses tend to be diagnoses of exclusion; meaning there’s no one test for this disease, so you have to rule out EVERYTHING else that it could be before you decide what it is. It’s a long, grueling process, and not everyone really wants to know what’s wrong with them anyway. For me, I couldn’t stand not knowing.
Your aunt who often complains of pain? Your friend who frequently has to cancel plans? Your sibling who gets migraines which always come at the worst times? They may have one of these diseases.
The online chronic illness community (spoonies, we call ourselves) is extremely supportive, but we need to have healthy people on our side too. We need real changes to be made in the world, and frankly, we are too ill to do it all on our own.
These are not diseases which merely dampen our fun or mildly cramp our style, these are diseases which kill. Sometimes that death is a suicide, as the patients cannot stand the suffering any longer. Even if left to more “natural” courses, these illnesses are evil thieves and rob us of years. They take away our livelihood, our joys, our passions and, eventually, our lives.
A DreamWorld/Enchanted Sleep crossover print giveaway!
I try to always do something around May 12 to help bring awareness to ME and its sister diseases. This year, I’m going to be giving away a print of a brand-new image… one which won’t be revealed until May 12th itself. It’s going to be a really, really great image though, I can promise you 🙂
This one will feature model Katie Johnson, and it’s so complicated, I’ve been working on it on and off for about two years. I had to put it aside for a long time until I upgraded my laptop. The file size was SO huge, I could only work on it for about ten minutes before it would crash my entire computer. Obviously, that didn’t work for me. It’s still a monster of a file, but on the new machine it only crashes Photoshop every few days, which is much better..
This image will be very unique in that it straddles both DreamWorld and Enchanted Sleep, a foot in each world like the Pillar of Hercules. No other image of mine does this. It will be a first on several fronts!
Another thing about this image that’s special is that it will be the first to be printed on my new, museum-quality paper of choice: Hahnemuhle pearl paper. You really have to see it to believe it. It is a thick, luscious paper with a bit of texture to it, similar to watercolor paper. What pushed me over the edge into switching to this paper though, is the very subtle, pearlescent shimmer built into the paper. It is magic. And it compliments the ethereal nature of my work so well, it seemed we were made for each other.
Did I mention that this special new print is a $400 value?
Is your interest peaked? Want to win the print for yourself? Instructions are right below. 🙂
Here’s how this giveaway works. It’s going to be very easy and there are quite a lot of ways for you to enter!
First thing: subscribe to my blog if you haven’t already. There’s a button in the upper right-hand section of the screen for you to enter your email address (which you may do safely, without fear of spamming or other annoyances). Do that, then move on to step two:
You have your choice here! You can either:
Retweet the facts I’ve tweeted about ME (these are embedded at the bottom of this post to make things super easy – you can like or retweet it without even leaving this page!)
Like and re-blog this post if you’re a WordPress user
You can do all of those, too! One note, if you choose to retweet any of my tweets, each new retweet will count as an entry. I’ve given you quite a lot to choose from, mainly because I couldn’t narrow it down myself any more! 😉 So, for example, if you retweet all 11 tweets, that will count as 11 entries for you. However, if you retweet the same tweet more than once, that does NOT count at as extra entry. The maximum possible Twitter-related entries you can get is 11. The same idea goes for the other social networking sites too. If you share my Facebook post, that’s an entry. If you share the same post twice (which I’m not sure you can do, but let’s say for argument’s sake that you can), then you still only get one entry.
And lastly, whichever social media platform you decide to use to enter the contest from, you must like/follow me there (and here on the blog) for the entry to count!
Now, those are all very important ways for you to enter the contest to win a gorgeous print for yourself. A large part of why the entries are based in social media is to help raise more awareness about ME (and other invisible illnesses) by word of mouth. However, there is another way you can get more entries for yourself.
Any purchases on ANY of the items I sell from today, May 4th, through midnight, PST, May 27th will count as entries! This means that EACH INDIVIDUAL ITEM that you buy counts as its own entry. If you buy five t-shirts from my Red Bubble shop, that’s five extra entries for you!
And on top of the purchases going toward extra entries for you, 25 PERCENT of ALL PROFITS on ALL ITEMS purchased will be donated to theMicrobe Discovery Project! The Microbe Discovery project is a wonderful organization here in the US actively looking for a cause and cure for ME. I strongly believe in what they do, which is why I have chosen them to benefit from my sales.
It’s a very win-win situation! You get to buy whatever it is that you’ve had your eye on, you get extra entries into the print giveaway and ME research is supported at the same time!
On May 29th, I will randomly pick one winner from all the entries and that person will receive the print! It will be signed and numbered and shipped to wherever you live, even if it’s the other side of the world! 🙂
One last note about purchases, if you make a purchase, please leave a comment here on the blog and tell me what you purchased and where it was from. Some of the sites I sell through hide the buyer’s info from me, so I won’t always be able to tell who bought what. I want to make sure your purchases are properly accounted for!
Prices are the same regardless of where you buy, so there’s no need to worry about having “hiked-up gallery prices” 🙂 My Etsy shop also has a few pieces of “wearable art,” some of which is inspired by DreamWorld characters and some of which was inspired by The Last Unicorn! There’s also a whole section of ME-inspired images from my Enchanted Sleep series!
Through my Red Bubble shop I sell all of the following items with my images on them:
Aly took and sent me this lovely shot of her carrying her tote bag! It was a bit strange at first to see my friend carrying a bag with my face in it 😉 We we both quite thrilled with the quality and according to Aly, it’s been getting tons of compliments and the straps are the perfect length!
INTROSPECTIVE is much more about self-discovery than it is about knowing what f-stops are or having fancy equipment. You don’t even have to have an actual camera; your phone will do perfectly well! The course emphasizes self portraits as a way to get to know yourself better, but the definition of “self portrait” here is quite loose. You never have to appear in an image unless you really want to. What I mean by “self portrait” in this case is simply any photograph which shows me something about who you are as a person!
This is a very relaxed, reflective class. There are no grades and no wrong answers! For eight weeks, you will receive a new theme each week and your assignment will be to create an image around that theme which reflects you. Love, joy and fears, for example, are all things you would be asked to create around.
This class is very unique! I modeled it after my own journey of self-discovery as I started taking self portraits. The art therapy was so helpful and healing to me that I wanted to give that back to the world in some way, so I createdINTROSPECTIVE!
And as an extra bonus, here’s a special coupon code for INTROSPECTIVE! Use the code May12ME25 to take 25 percent off the cost of the course! Now that’s a win-win-win!!
I know you guys hear me talk about ME quite a lot, but here’s the thing. It matters. It really, really fucking matters.
There is so much confusion, misunderstanding and so many flat-out lies about ME that we all need to work extra hard to shine the light of truth on it. It’s not all the public’s fault; after all, they’ve been lied to by medical professionals for decades. It all came unraveling in the 80’s when ME’s name was intentionally changed to “Chronic Fatigue Syndrome” and given the belittling nicknames of “the yuppie flu,” “the disease of depressed, menopausal women” and, more recently, “fat, lazy housewife disease,” just so insurance companies could deny patients coverage.
ME does not discriminate. It does not target people by color ,gender, social status or age. It attacks anyone and everyone it can. It destroys lives. It brings promising careers to grinding halts. It is not a way to “get a free ride;” we struggle just to sit up and get out of bed.
It could be your sister. It could be your boyfriend or girlfriend.
It could you.
How many more lives have to be sacrificed on the alter of insurance companies’ desires to not pay out before we get change? How many more patients have to take their own lives in despair? How many more seriously ill patients have to endure the most hateful slurs you can imagine being thrown at them? How many doctors will sigh, roll their eyes and tell us there’s nothing wrong with us psychically, that our problems are all in our heads?
No more.
We cannot let this happen to one more person. Too many have endured this already.
We have the power to make radical changes. We have the power to change society’s view of us, to force the government to give us proper funding, to stop treating us like Cinderella instead of their own daughters. We have the power to unlock the mystery of ME and find a cure. We CAN do this. But we must come together, make our voices heard and DEMAND it. It will never be easily handed to us. Too many huge companies are invested in not spending any money on those with ME. But while history shows us many ugly truths, it also shows us that we, the common people, have great power in our hands to bring about the changes we want.
We just have to ask for it loudly enough.
Please join me in demanding change for patients with ME. Things cannot continue the way they are any longer.
And as you help me advocate for invaluable change in the world, you’ll also be giving yourself a chance to win a gorgeous, fine art print 🙂 Help me with this. And thank you.
[*Because the United States does not officially recognize the name “myalgic encephalomyelitis,” despite decades of public outcry for change and hundreds of thousands signing petitions, they continue to stick to “Chronic Fatigue Syndrome” or “fibromyalgia.” Depending on which doctor of mine you talk to, I may have three different diagnoses. The US is especially complicated in how it defines – or, rather, it’s lack of definition – the differences between the three so it’s impossible to talk about one in the US without talking about all of them. For the record, they are NOT all the same disease, but that is essentially how the US treats them. I know that what I have is ME and not the other two, but many of my doctors had not have heard of ME until I told them about it. ME has scientific, diagnosable guidelines, which I fit, but the country still refuses to adopt the name and its excellent guidelines. If you’re interested in learning more about why this is, here’s an article for you, but for this post, I will leave the subject there.]
Last summer, I had recently watched some of the BBC’s episodes of Life, their truly excellent series on all kinds of wildlife. I was watching it while I edited other images (I rarely watch TV without doing a second activity, unless we’re talking about shows like True Detective, Breaking Bad, Boardwalk Empire, Rectify, etc, which all demand my full attention) but my editing suddenly halted when this segment came on.
I remember backing it up and watching the whole piece again, mesmerized, deeply touched and saddened by such complete, beautiful devotion from any creature to another. As I watched it a third time, I knew a photo was going to come out of it somehow… it was resonating too deeply with me for anything else to happen.
Now, as to how the medieval elements worked themselves in… I can only give you guesses since I’m not really sure how my brain made the jump myself. I know that part of it had to do with wanting to give her eight “tentacles” of some kind (which made its way into her hair) and wanting to give her a pouch to carry her eggs in. For some reason, I thought of a kirtle, a medieval garment which lasted for several centuries. The kind I was picturing were from, I believe, earlier on in the medieval period and looked more like what we might think of as over-dresses or fancy aprons.
A red kirtle from a modern pattern by Burda.
Researching medieval garments inevitably led to medieval hair… images like these set my brain whirling.
You can see how the braided and wrapped hair, along with beautiful headdresses leaked into my character.
As usual, I wasn’t sure how I was going to do this when I started into it.
I had a longish, dark brown wig which I’d bought very cheaply quite a while ago. When it arrived, I realized why it had been so cheap; it was already snarled and tangled before I’d even taken it out of the package. I halfheartedly attempted to work the same wide-tooth comb I use for my own often snarled and tangly hair and quickly realized it was a futile endeavor. I tossed the wig into the back of the closet and mostly forgot about it.
When this project came up, I remembered it though. Even though it poofed up like a drying poodle as I combed it, that would work in this case, since I’d be wrapping it up and looping it around. I spent most of one afternoon just combing it out – not detangling it, mind you; there was never any hope of this wig being tangle-free. My best hope was to get it to the point where I could separate it into eight segments. It took all the strength in my arms and they were very unhappy with me for the next few days, but I managed to do it.
In the meantime, I had discovered arm knitting, which I found I could do without a) using much brain power, b) quickly c) without using much muscle power and d) it had very pretty and interesting results. The resulting squares and shapes I made from the looping yarn had such a beautiful, organic look, almost like a coral reef or some other under-sea plant/creature, that it felt completely at home with an aquatic-inspired creature.
After the combing session, I put the wig away for a day or two. I brought it out again after my arms had regained a little strength. Of course this also meant that it had had a couple days left completely on its own without any outside help to start tangling again, so I spent a little time re-combing it to get it back to a manageable state. I quickly arm-knit a band of yarn which would form the circlet of my headdress and made sure it would fit.
I put the circlet of yarn back on top of the hair and began crisscrossing the yarn (which was a beautiful, slightly metallic variegated blend of soft pinks, blues, lavenders and silvers) over the different segments, using liberal help from my glue gun to keep everything in check. Each segment was attached back up to the main part of the circlet after its crisscrossing was done.
The two front, face-framing sections of hair were left for last. I added some looping pieces of yarn between the other segments to make it more headdress-like. The front segments got crisscrossed with their own lengths of yarn and were then attached to the very back of the circlet, forming two large loops on either side of the face, with hair tentacles hanging underneath them.
Then was the fun part: beads! I raided my bead stash, with an eye toward pieces from a very elaborate headdress I’d made which had recently died, spilling beads all over the floor. I knew there were some really cool pieces which I’d used for it, so I repurposed them again in this piece. I didn’t want it to be overwhelmingly be-jeweled and sparkly, just enough bling to make the character look a bit important; perhaps some kind of royalty.
Moving on to her dress, I had a high-necked, sleeveless, pink chiffon dress from Ebay which I’d gotten for little more than a song. Pink isn’t a color I’m usually drawn to that much, but since the original octopus was pink, my character was going to be pink too. I kind of eyeballed the general shape of a kirtle from ivory tulle; a lot was going to happen to it and since it was so light and transparent, it didn’t need to be perfectly symmetrical.
I free-styled a yoke for the kirtle with more arm knitting and added some cap sleeves (which are only visible in some of the images unfortunately). One thing I was finding with the arm knitting was that is is EXTREMELY forgiving. Arm you within an atom bomb’s range of what you were going for? Then it will probably work!
To unify the costume and also enhance the organic, oceanic feel, I arm knitted a piece for the bottom of the kirtle, basically a large triangle, and two smaller, upside-down triangles for either side of the egg pouch. I left several yarn strings loose from the pouch triangles which would be used to tie the kirtle behind the back of the dress, just like a regular apron.
The eggs were leftover from a shoot I did with Paul Telfer as the Sleeper’s Sentinel. I’d had to buy a dozen of the super-large plastic eggs so I had PLENTY to use for other shoots! I kept these fairly simple since there would be a lot going on visually in the images; I started with spray-painting a base coat of a semi-metallic light gold color and added flecks of bronze-black to make them look more like real eggs. Repeat until they look right. I knew I’d only need five or six eggs, since that was as many as would fit in the pouch I’d made so I didn’t waste any time painting extra eggs.
I did do one thing to just one egg though… I found a nail and a hammer and while the egg was still in two pieces, I hammered a hole through from the inside out. Some sharp knives, pliers and more hammering later, I’d created what looked like a fracture in the egg from a chick inside starting to hatch. Eggs = done!
I’d had my faithful model Dedeker Winston in mind for this character the whole time. I usually cast characters in the same way I create them, just by what “feels right.” I had not consciously remembered it, but it turned out there was a really wonderful real-world reason to have Dedeker play the octopus-mother caring for her eggs. Dedeker has been an egg donor many times to couples who are unable to have children on their own. In fact, one family has two children, both from Dedeker’s eggs, and they just requested a third! It’s very unusual for a family to have so many children from the same donor, but I think it’s really lovely that all of their children will be linked in this extra way. And clearly Dedeker produces really fantastic babies! 🙂 Once I remembered that, it felt truly serendipitous that we were shooting this character together.
I knew that my wig was several shades darker than Dedeker’s hair and I had a couple thoughts on how to deal with it. I knew she had a dark brown wig of her own which we could layer under mine, or we could totally cover all of her hair with a wig cap. In the end though, she simply twirled her hair into a low bun, I set the wig on top of her head and since there was so much going on with the hair, it looked completely natural and blended right in. If you looked closely, you could see that some of the hairs on her forehead were a bit lighter than the rest of her head, but I matched them up in about 30 seconds in Photoshop. Sometimes the simplest method is the best!
We set out on a morning last summer to capture these shots of the character I’ve dubbed the Pink Mother. We got started early and the sun was already blazing; it promised to be a miserably hot day but at the moment it was still pleasant. I started shooting Dedeker in a dryer, dustier, yellower scene and led her along a path which gradually got greener and lusher, mirroring the octopus’ journey to find the perfect environment for her eggs to be born into. The color pallet moved from warm and vivid to cool and less saturated, especially in regards to the Pink Mother herself. As she nears death, the paler she becomes until the last shot, where she is very white.
She sacrificed everything she had for her eggs. She loved them, cared for them, caressed them. She journeyed over countless miles to find a safe, green place for them to be born. Though it cost her everything, she never hesitated. And, it seems, her journey was worth it. The cracks in the eggs prove her right. They were brought forth from the deepest love there is, and that can only be the best start to these new beings.
So thank you to Dedeker for being my medieval octopus mother and letting me share your story about your own eggs! And thank you for trusting my vision even if it seemed questionable at the time 😉 You were the perfect, purest-loving mother to those babies!
And now enjoy the full images, some detail shots and behind-the-scenes captures!
Mythic Pictures 
Shades Of Sleep: Invisible Illness Day
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Sometimes I get a little daunted when May 12th rolls around each year, wondering what new I can say about the subject. If you didn’t know, May 12th is Invisible Illness Day; a day to bring attention and awareness to illnesses and diseases which don’t manifest obvious outward symptoms for the world to see. If someone has the measles or is in a wheelchair, you can hopefully tell that just by looking at them. Diseases like fibromyalgia*, Chronic Fatigue Syndrome*, Crohn’s Disease, multiple sclerosis, mental health problems, Complex Regional Pain Syndrome7, Celiac Disease, lupus, rheumatoid arthritis, Lyme disease and the one I have, myalgic encephalomyelitis* (ME for short) are considered invisible illnesses. This is by no means a comprehensive list, just a few examples.
According to Wikipedia and the 2002 US Census Bureau, 96% of chronic illnesses are invisible. This adds in an enormous extra challenge in obtaining proper medical care and treatment as well as being misunderstood by the population in general. If people don’t know that there are quiet, private, hellish wars being fought every day by millions of people all over the world, how can we ever expect our treatment to improve, let alone find cures?
That’s why May 12th is so important. We, the sick, need people to understand, to care, to help us advocate when our treacherous bodies won’t allow us to. Awareness is the critical first step in any change happening.
Why is it so important that we treat ME? What makes our disease so special?
It can be fatal. People die from this. If not from the disease ravaging our bodies for years and decades, then it often comes by our own hands as we can no longer endure the daily torment.
No one should have to live like this. As someone who has what’s considered only a “moderate” case of ME, I can tell you it’s a living hell. Pain is nearly constant, sometimes to the point where I’m in tears and desperately wishing to die. It takes away the plans you had for a normal, fulfilling life. Careers, hobbies and passions are taken from you. You either simply cannot expend the energy on anything non-essential, you lack the basic funds to sustain most pursuits because most of us can’t work, or your brain is compromised by what we call “brain fog” and you’re unable to focus on and accomplish anything. (More on brain fog later.)
We deserve to live happy, fulfilling lives, just like everyone else. When you’re constantly in pain, always exhausted and unable to think clearly, this doesn’t leave much room for whatever kind of life you wanted for yourself. And when I say exhausted, I don’t mean that we’re tired because we didn’t sleep well the night before. On a good day for me, it’s like how other people when they have the flu. A constant, crushing weight that makes the slightest exertion a Herculean effort. On bad days all I can do is lay in bed and drag myself to the bathroom periodically. Sometimes even feeding myself is a challenge. I might have to choose between feeding my animals or myself, because I don’t have the energy for both. And of course the animals always win; they’re my responsibility.
I am mostly house-bound and I require help with the sort of tasks I used to take for granted. Forgot something at the store? No problem, just go back tomorrow! Nope, not with ME. Any time I take a trip outside my home, I have to plan at least one full day of recovering at home from it. If it’s something late at night, very noisy and extra stimulating, plan on 2-3 days at least. (But frankly, late night, noisy, stimulating activities happen EXTREMELY rarely because of the damage they cause later.) When I do gather my strength to photograph models, that is my exertion for the entire week at least.
ME is extremely isolating. You can’t just go hang out with friends. You can rarely make it to family functions. Last year, I had to miss a surprise party thrown for my own mother, something which still upsets me today. I was just too exhausted to go, and I knew that if I REALLY pushed myself and forced myself to go, I would pay for it for a very long time.
ME is vengeful god. If you violate any of its insane decrees, you WILL be punished. Probably for a long time; sometimes forever. There have been cases where someone with ME did just a little too much one day, they spent the next day in bed… and then they were never able to leave it. At the same time though, if you try and do as little as possible, your energy supply will shrink and you’ll be worse off too. Damned if you do, damned if you don’t.
Right now ME received approximately 5 million dollars a year in funding from the US government. To put that in perspective, that’s about the same amount given to researching hayfever. Male pattern baldness gets at least four times as much. HIV/AIDS, which is comparable in both frequency in the population and severity of illness, gets about 600 times that amount. I’m not saying that HIV/AIDS patients shouldn’t receive that much; I think they should! What I’m saying is that ME needs to be recognized at all levels of society and government as the deadly, hellish disease that it is and get proper funding as well.
This year I decided to do something that was a big stretch for me physically. I planned a set of self portraits (all shot at the same time) with a rather complicated makeup look for my Enchanted Sleep series on living with ME. Doing that much makeup on myself normally would have been enough exertion for one day for me, but that plus shooting the images, even with Geoff’s generous help, put me in bed for days afterward with migraines pounding my head. But I’m not sorry. It was worth it.
Oh yes, brain fog. (Which I’ve got a bit of as I’m writing this.) It’s like when you have a fever and can’t concentrate or think clearly. Sometimes it reaches new heights where people suddenly can’t spell, remember their names or understand their native language. Most days it’s more like mentally wading through a bog, at least for me. I decided I wanted to portray this visually in the images I created since it’s such an annoyance at best and terrifying at its worst. I think it will be obvious how I incorporated that element into the images.
I have the video I took of me applying the makeup as well as the finished photos to show you, but I want to issue a challenge as well! I want you: you, who are reading this right now, to #GoBlue4ME! Why blue? Because that’s our disease’s awareness ribbon color. What does “going blue” mean? There are any number of things you could do to go blue. I created a couple images that you could use as your profile photos for May 12th, or even this whole week (or more!). You are more than welcome to download them and use them however you’d like! You could dress all in blue and post a photo of yourself with the #GoBlue4ME hashtag on any of your social media accounts. You could get a bunch of blue balloons, take a photo of them and use the hashtag on them too; anything blue works!
For makeup artists, I’m issuing a special challenge. As you’ll see in my video applying my makeup, I used ONLY blue shades for this entire look. Foundation, concealer, eyeshadows, blush, mascara, EVERYTHING. I challenge you all to do the same and post your looks using the #GoBlue4ME hashtag! If you’re on YouTube and create makeup tutorial videos, this would be perfect for you. There are so many fun makeup challenges going around YouTube, Instagram and other social media sites; let’s make this the next big trend! You’ll not only be stretching yourself, you’ll be contributing to a wonderful cause and helping us raise awareness for the whole world!
I did allow myself to use shades of teal, green and purple in my look because they’re offshoots of blue and I really thought it would make for a better overall look, so feel free to do the same. And you don’t have to make the blue tie into your foundation color as well, but bonus points to you if you do. 🙂 Let’s have some fun, create gorgeous looks and help a community in need of a lot of support by coming together!
Ready to see the video and my images? Here you go! I’ll be releasing the images individually over the course of the week leading up to May 12th, but you can always find them all here.
And please, pass these around! Share the links, video and images with anyone and everyone! We have to make a lot of noise to get the change we so desperately need. You have my full permission to share far and wide!
And please, if you take up the #GoBlue4ME challenge, let me know! Of course, I can search the hashtag and see what you guys have been up to, but I’m very excited to see what you come up with!
One last note, your going blue does NOT need to happen on or before May 12th. Keep doing it as long as you’d like to! The longer we can keep the word spreading, the better.
Thank you to absolutely everyone who has and will participate in this! You are helping so many more people than you know. I thank you from the deepest wells of my heart.
Download these images and make them your profile photos for a day!
Shades of Sleep, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
Shades of Dreams, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
Shades of Blur, © Sarah Allegra. A self portrait about brain fog and living with myalgic encephalomyelitis.
*[There are various theories and arguments about weather ME, CFS and fibromyalgia are all the same disease or separate. You’ll find as many different opinions as there are sufferers. It is my personal belief that they’re probably all the same thing, or at least all very closely related. Some people are extremely militant about using the “correct” name; I find it more important to help people understand by using the name they’re most familiar with. I tend to use them all interchangeably depending on the situation and who I’m talking to, but if I had my druthers, I’d simply call it ME and be done with it.]
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